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Dumb Luck, a Kallmans Survival Story.

September 19, 2015

This is a story published by a KS patient on the Rare Connect website and in the Facebook KS groups. It is a comprehensive story which maybe of interest to fellow patients. Some patients also find it useful to write out their life stories in this manner. It can help younger patients understand what it is like to have Kallmann syndrome and more importantly how they can overcome certain obstacles.

Rare Connect Website.

I have thought long and hard before putting down on paper my thoughts regarding Kallman’s syndrome (KS). Mostly because I’ve always tried to avoid what I feared might lead to wallowing in self-pity, though I think we all find ourselves there at some point in our lives. Now that I’m older I find myself reflecting, without fear of wallowing, on the impact KS has had on my life, and how things might have been different. This is not in any way a “why me” diatribe. I consider myself an amazingly blessed man — with a wonderful wife of 28 years who is my greatest champion, and two fine sons – I have a great relationship with my family, and a good life. Still, I often wonder where I would be if this slip in the genetic code had not decided to visit me during my development as a young man, and sometimes reflect upon the hard and hurtful moments and the struggle it has been to get to this point.

In the following chapters I will try to convey my thoughts during specific points in my life. I hope to help the young men currently going through the process of development with KS, and to help their parents understand the experiences, thoughts, and frustrations that come with growing up with KS. If in setting down these reflections their burdens might in some ways be relieved, my hopes will be fulfilled.

Chapter one. The early years:

I am one of 5 children in a standard middle class family. Two boys and three girls. My father was a successful businessman and my mother the head of the household running all things in our lives and managing the house as we moved throughout the world chasing my father’s career. As it happens I am the only one of the five children to be effected by KS. This in itself made it difficult for my parents to get a grasp on things when they started to unravel. Being the middle child and the first son, they had many little lives on their plate and little experience on what should be happening to a young man. My brother was the youngest of the five so by the time he was developing normally, I was into my late teens and the differences became more apparent.

It’s hard to remember when I first felt different. The two main things that impacted me during the years from birth to puberty were anosmia (lack of smell) and mirror movement (one hand moves when the other does). My wife calls this hand-hand and it must be managed carefully. As an example, if you have your arm around a lady and decide you need to scratch your head this may cause an unintended grope leading to either a slap in the face or some very strange looks from those around you so one must be careful or save the head scratching for the appropriate moment.

I remember my sisters talking about how things smell but I have no reference of smell so I think they are making a big deal out of nothing. My mom tells be to brush my teeth and shower so I don’t stink but I don’t get it. I am not offended by how I smell, my breath does not smell bad, and I don’t understand the deal with changing clothes every day. People call me filthy and think I am just a lazy kid who does not care. I do care, but what is this smell thing? People look at me funny at school when I grab something and the other hand moves but I can’t stop it. I really try. I wonder if there is a board I could attach to my hand so I could train my other hand not to move and solve the problem. I tried this but no luck. I try sticking my hand in my pocket but then I look weird, so I guess its ok to tell people that I have this cool feature, I move one hand and the other moves. Some think it’s cool, most think it’s weird. Other parents look at me funny with sad smiles but I don’t know why. What are my parents to think? I live in a world where pig pen hangs out with Charlie Brown. It must be that I am just a sloppy kid.

Chapter two,Sports:

I step up to the plate, the bases are loaded, and we need the runs to win. It’s the finals and my team is strong. My mom and sisters are in the stands cheering like crazy. My little brother and cousin are the bat boys. The pitcher is hot. He has been striking us out all day but now is my time. I have hit 20 home runs this year and the opposing team knows it. I never out of the park but I can hit deep into the outfield and I am a fast runner. I am 12 years old. I have been elected by my team to be on the all-star team. I am a pitcher and I love this game. The pitch comes high and outside. I love those. I swing and feel the sweet connection of the bat to the ball. It flies out to left field, I am a righty with a fast bat so I always hit that way. The opposing team shifted over, they know me but this one gets between the left and center fielder. It’s another in the field home run as I make it around before they can relay the ball to home. The stands go crazy, my coach comes out to admonish me for swinging at a high one but he is drowned out by my team coming over to cheer me on. I cannot be happier.

Its tryouts the next year. I am 13. The other guys are bigger but surely they remember me. They do but the pitchers are faster this year. My bat misses more times than it connects and when it does it is shorter and out to right field, my bat is slower. I can pitch I tell the coach, surely he remembers from last year, but my balls are slow and last year’s strikes are this year’s home runs. I am assigned the outfield. Center field is my position. I am still a fast runner and I run my heart out and can catch just about anything, but I remember the glory of the infield. I pester and pester the coach until he gives me a tryout. He hits them hard to me for 30 minutes, more than any other kid, anger in his movements like I am wasting his time. I am not big enough, fast enough, I should just be happy to play the outfield. I love the game, so I do. The next year I don’t make the team.

Chapter Three. Middle School:

I hate middle school. The guys I played ball with are bigger, thinner and attracting the girls. I like girls, I really do but I stopped growing at 12. I have no more height but I have more weight. I don’t play sports any more. My parents think I don’t try hard enough. I am sloppy, I smell and I have no friends or the ones I have are hanging on by devotion. They are growing and the girls don’t hang around when I am around. I really like this one girl. I wrote a note to her expressing my feelings. She returned it torn up with a smile. I grow my hair long as all do but it’s not cool enough. Kids sit behind me and pull it during class. I am the weird smelly outcast. I retract to the only safe place I can find. The back of the class, the bus and the playground. As long as I stay away from people they will leave me alone. I hate school. I dread going every day. My head hurts all of the time. My grades suffer. I join the Boy Scouts to get out, or I am told to. I am sent to scout camp where the other scouts put soap in my canteen and throw gum in my hair. All funny stuff to them. My sister who is a year younger than me is now taller, popular and has great looking friends.

She tries to introduce me and make me part of the group but it’s no hope. I am a 12 year old living in a 15 year old world. Trying to be left alone I leave scouts and don’t interact at school. No people to study with, no after school activities. My head hurts more. One day it’s so bad I call home. Mom is not around so my dad needs to leave work to pick me up. He is not happy. “I hope you don’t think this means you will get out of school work” is all he says. My parents don’t understand. Why is their son falling into this lazy apathetic kid who hides in his room? I find safety in my own world. Comic books and model airplanes. In my day many of our fathers were WWII vets or had friends who were. I loved reading history about the air battles and my room had model planes all over. I have Mustangs, Spitfires, Hurricanes and Messerschmitt’s all hanging from my ceiling in mock dog fights. The Fighter planes were fast, sexy and winners. I liked that. A controlled environment is a safe environment for a young man with KS.

Chapter four, A new life:

From age 10 to 15 we lived in the Middle East. Now my parents decided we needed a taste of home. Mom was to take us home to live for a couple of years while dad stayed behind to keep working. This was great news for me. I could get away and on to a new school. New friends and new chances. I was close to driving age and I wanted to get my driver’s license. I may not be as big and popular as the others but I can get my permit like any one of them.

I am 15, my knees hurt all of the time. Mom thinks it must be because of the additional weight and no growth due to my late blooming. I go to the doctor. He takes x- rays and sees that my tibia bones have not fused as expected at my age because of the late blooming thing. The added weight is putting strain on the undeveloped bone causing the pain. All will change when I start to grow he says.

Before we left the Middle East my dad told me if I wanted transportation bad enough I would have to earn it. If I had B’s or better for a semester he would buy me a motorcycle. I set my mind to this task. I studied all of the time and met the goal. Now back in the USA I had a shiny new Honda CB125S. All I needed was my drivers permit. I sign up for driver’s education at school. We have a lot in the back of the school to train and a local dealer provides the school with Pontiac Firebirds for driver’s education. Four kids to a car. The others make it a game to make sure I never get a chance behind the wheel. Everyone thinks it’s funny. Undeterred I explain the situation to my mother and soon my grandfather takes me out driving in his old ford station wagon. I look in the rear view mirror a lot. I like knowing what is behind me, that’s where bullies make their approach. Grandpa tells me to forget about what is behind me. Look forward that’s what matters. He has a point in many ways but looking behind you is a KS survival instinct. He is a better driver’s education than I ever could have had in school. Wherever he goes, I drive. Grandparents are an essential tool in the KS survivor pack.

On my 16th birthday I go to take my driver’s test with my father, he needed to take his test as well because he had been overseas so long his license had expired. We are in his new 1977 Lincoln Town Car he bought for my mother to drive while we were back in the states. When it was my turn the state trooper gets in the passenger’s side and gives me a funny look as I sat there barely 5’ tall behind the wheel. I pass all of the tests and am then instructed to Parallel Park between two cones. Barely able to see beyond the dashboard I give it my best shot. I am apprehensive backing in and he tells me to keep going. I will hit the cone I tell him. No problem he says, this beast is too big anyway. I pass, my father fails. BIG ego boost.

Chapter 5, Living Mobile:

I now had my license and a motorcycle. No more school bus. I park my bike outside in the street. A big guy, a member of the football team is mad that I am taking up space for his car. I am allowed the space by law I tell him, He and his buddies lift my bike and toss it into the grass. The principle gives me a spot by the school to park. Kids spit on it and put rocks in the gas tank. It seems I am not fitting in here either. But I have some advantages. Being educated overseas I am ahead of most of the high school students in public programs. Other students with problems in class sit next to me to cheat off of my tests. One even reaches out and turns the page over so he can look at an answer on the other side. What do I do? If I shout out I am a dead man. I recline to the back of the class again not willing to be dishonest.

Her name was Laure. It was the homecoming dance and I wanted to jump into the world again. Yes I was short, heavy and awkward but I still had the drive to get out in the world and I really like girls. I asked her to the dance and she said yes. Man was I excited. I have a date. My first. I was going to make sure and do everything I can to make this a special night for her. I got into my best suit, cleaned up and brushed my teeth. By this time I had gotten to love showers and brushing. Sure I could not smell but this was not known at the time but I knew that smell offended and I was not going to break the code. Keeping clean made me safe to a point. I borrowed dad’s car, cool I thought to take a girl to a dance in a Lincoln. After a nice dinner we arrived to the dance. People were milling around and we walked over to a group of the cool kids. Talking as if I was not even there they asked “what are you doing here with HIM”. “I just wanted to come to the dance” she replied. So after standing to the side for a couple of hours I drove her home and that was the end of that. You may think at this time that I should have shouted out with indignation and just left. Perhaps I should have. A big part of this syndrome is having a survival mode. You cannot fix it overnight so fighting it does not work. Stay passive, stay quiet and the problem goes away or at least gets you out of the embarrassing place and back to your safe zone. I spend my break time at school in a corner away from people. During the winter it seemed I never removed my coat. Comfort I guess. One day I am sitting in my corner on a radiator waiting for the latest break to end and a few guys stop by and say they want to help me. Drugs are bad for you they tell me. I should stay away from them. I don’t do drugs, never have but they are certain that the only reason I am the way I am is that I am strung out. Wrong guys, guess again. They are kind and well-meaning but no one knows about KS. I think this makes it hard for those who want to help to relate.

Chapter six, The first discovery:

About age 17 my mom, raising five kids with dad visiting every now and then decided that the late blooming thing was talking too long to bloom. She took me to a doctor that decided I was a late bloomer and he was going to give me a few shots to move it along. Every couple of weeks I would go to the doctor for a shot and the next time I would visit he would check me for side burn growth and give me another shot. To this day I really can’t grow side burns. What these shots were are lost to time.
Her name was Debby. For some reason she liked me and more important, her father had no problem with her going out with me on a motorcycle. We went to movies and other dates and I had my first kiss. Life was good but I got the feeling she was looking for a long term relationship. At this stage I was 17 and would be 18 half way through my senior year. All others were developing normally and developing more mature relationships. I was still physically and emotionally 13.

Lucky for me, life changed yet again. My parents decide we would move back to the Middle East during the summer of my junior and senior year. I ask about the shots and am told not to worry, they will find a doctor over there to speed along my late blooming. The best thing about moving was most people in the school in Iran were military so they were there two years then move on. Good news, two years later more new students. Clean slate.

Chapter seven, The second discovery:

We moved back to Tehran in the early summer, plenty of time to get settled and spend some time by the pool. One day at home my father came into my room and was almost knocked down by a horrible smell in the room while I was quietly building my latest airplane model at my desk. It seems my sister’s cat was using the corner of my room as a litter box and I had no idea. “You can’t smell THAT?” Smell what I ask? My dad figures something was wrong so he made arrangements for me to go back to the States for tests. I don’t know who my father talked to but somehow we ended up at the Endocrinology group at Georgetown University Hospital. Thinking about this in hindsight, once a symptom of a condition is known a path for diagnosis is easier. But the symptoms for KS are so benign. Lack of smell does not really impact day to day life, nor do the other symptoms like mirror movement. After all I was a great little athlete. Hand- Hand had no impact on that. The Doctors drew so much blood it left me dizzy, took x- rays, sucked saliva and put dozens of vials under my nose asking “do you smell that” and measured things I never thought would matter. My mother was there with me and she went through some tests as well. Kallmans syndrome. At last this thing has a name. So I am not destined to be short fat with a squeaky voice for the rest of my life.

Things will change. We can make you grow they said but probably no chance of ever fathering children. OK, whatever I am thinking, just fix this thing. As a senior in high school I am barely 5’ tall. I have not given any thought to kids in my future. I just want to get big enough so girls would notice me. Girls, or the lack of interest on their side was a primary focus above all others. My mother is clearly relieved that something can be done but I suspect feeling a little pain due to the KS most likely passed down from her side tried to put a good light on it. You’re so lucky she said, you could have been diabetic. I don’t know why that was the trigger but I exploded, spilling out relentless frustrations pent up over the years leaving my mother in tears and me regretting the moment even today.
While I was home a reached out to my girlfriend. “Good luck, I am not interested” she tells me, happy I think that she did not need to break up in person and never expected me to be back so soon. But I am fixed I said. They know now what the problem is. Another isolating thing about KS is the diagnosis. Letting people know you have KS is not something you should share, but I wanted to shout out to the world. I AM NORMAL. Not a good idea. Telling girls you are only 13 but will grow soon and will be ok in the relations department as long as you get shots is really not a good opening line to a lasting relationship.

Off we went back to Iran loaded with vials of medicine and syringes that my mother needed to inject every 2 weeks into my rump. I am very embarrassed that my mom needed to do this but my father would have nothing to do with it. KS is hard for fathers. Living in such a male focused society, its nearly impossible for a father to relate to a young man’s lack of development. No sports and no male bonding experiences. His friend’s sons are into sports, shaving, getting the deep voices that define men. His reaction was to stay out of the way, and see what happens and step in every now and then to shove me out into the world to see if I stuck and then provide some shelter when I ran back home. This method would have some negative and positive consequences in my future.

Senior year, the first day. Walking through the campus compound that I remembered so well and looking forward to the year. I had no idea what I was going to do in the end. If most KS people are like me, they are not thinking about careers and families and the future. They are just thinking about the next shot, the next change and hoping that soon they will be normal enough to fit in. Those thoughts were soon erased by the group of guys that came up to me and threatened freshman initiation. Funny stuff to them but to me it was a reminder that things were no different, just different faces. I was however now being treated for KS so I had a renewed confidence that this would soon be over. For a young man with KS the waiting is the hardest. We want it fixed NOW but the reality is development will take as long as the standard time if I had developed normally. As a parent I think managing expectations will be the largest challenge.
Other than the general harassment school was ok. It was sadly helpful that there was a revolution brewing. We lived in Tehran, Iran and this was 1978 so we were in the heat of it. The result was in many cases no after school activities and many nights at home. This worked great for me. My father purchased a stereo system from HeathkitTM. For you younger ones, this company sold electronics in kit form. Televisions, weather stations, you name it could be purchased in kit form. All you needed to do is solder all of
the components in the circuit boards and assemble the unit. I spend my nights until the blackouts soldering and testing my work sparking a lifelong interest in electronics.

During this time the government turned off the power about six PM every day. When the lights went out I spent the rest of the night studying by candlelight. Sounds 1800’s corny but that is the way it was. Being home at night was no bother for me but I imagine the social oriented students like my younger sister were climbing the walls. I fall into a group of oddball kids. It’s good to have a group. We all stick together, study together and hang out on weekends. The renewed confidence that things are changing makes it easier to jump back into life. The bullies are still around but I know that I am changing and there is a light at the end of the tunnel, so I care less and less about the weird looks and comments. Still not much girl interest but that will change I tell myself.

The revolution progresses and soon it is December 1978 and the daily riots and fighting have most Americans and their families getting out and getting out fast. We packed our one suitcase and jumped on an evacuation flight, my father stayed behind to continue running his business. Big changes again, although I have only been away for six months I will be back at my old high school in the US. I wonder if people will notice any difference.

Chapter Eight, What a f***ing shock:

We are back in the states, my mother drastically getting furniture together and setting up house a week before Christmas. I am trying to get my bike back from a family member that has it stored in their garage. The phone rings and I answer and the conversation goes something like this:

Hello, may I speak to Mrs. M. please? Yes of course I will get her.
Ok, thank you sir.
Hey Lynne?
Yes?
It’s Cal.
….huh?
It’s Cal Lynne, your Brother.
….what a f****ing shock.
Now that is a cool thing. My older sister now living in Boston had called home to see how we were settling in. She did not recognize my new deeper voice, man was I on cloud nine.

I have many shocks due to late development, both good and bad. Starting adolescence at close to 18 years old I am basically a 13 year old full of emotions expected to respond to the world as a more mature post pubescent young man. The changing voice is good but hormones bring flares of temper that add to the frustration of a much taller younger sister and a younger brother rapidly catching up to my size and basically at the same development point. Add to that the renewed and stronger desire to meet girls and have them want to spend time with me makes me a powder keg primed to go off at any time.

Having another semester of private school in me has made the balance of the school year almost not needed. I am advised all I need to take is an English class to graduate. This works with my desire to stay away from the hassle of school. I go to my one class and then off to work. I get a job in a hardware store. This is great, I can make some money. All they have is a job polishing the floors every night but I am happy with that to start. I figure I can work up to stock boy and get more money. After months of floor polishing I approach the manager to move into a recently opened stock position. He tells me I am too small to do the job, not able to lift what needs to be lifted and my appearance is not neat enough. I am better suited to keep doing what I am doing. This is just another example of being told what I can’t do rather than what I can. It makes me mad but what choice do I have? But I am starting to grow. I meet a girl at school in the smoking area. Back in the day schools segregated areas for the smokers to hang out. Mostly the outcasts, not cool or college bound. I fit in and this new girl likes me.

Dating at this stage of development is both exciting and frustrating. I have all of the urges with about half of the abilities needed to get the job done. At this stage of medication the injections provide an instant hit of testosterone that fades over a two week time so I go from crazy horny to apathy every two week cycle. It’s hard for girls to understand this I guess but we get along well enough, but never really close the deal.
Chapter nine, Ready for the world, not really:

My father always made a big deal over landmarks in life. High school graduation is one of these that must be attended to with the utmost fanfare. I am told we are having a big party and they are inviting all of their friends over for the event. I am required to stand up in front of everyone and present my plan for the future. KS people absolutely hate public speaking, in fact we are terrified of it. No one who is underdeveloped has any desire to stand in front of a crowd and present themselves to the world for additional ridicule. I create a one page plan talking about joining the Air Force and one day being part of the Thunderbirds flight display team. Big lofty goals are the thing in my family and it is greeted with sad knowing eyes by the other adults and smiles from my parents. In many ways my mother and father refused to accept that KS provided any limitations on my future. Other parents may have counseled to aim for what is possible and accept the limitations for what they were. I am not sure what path is better. I think it is a combination of path and personality that defines the correct road. I have no complaints on the outcome over the years although I could have done without the embarrassing moments like these.

So out of high school I was. My graduation picture with me and the rest of the family shows me shorter than them all at 18, even than my mother who was just north of 5’. I hate that picture. Next step the Air Force recruiting office. They were happy to see me and I was happy to be there. First step on my way to a new life. I passed all of the written tests and did so well they were planning for me to work of fighters. I was excited. My application was processed along with my medical records including a letter from my doctor advising he saw no reason why KS would impact my ability to perform my Air Force duties in any way. The package came back with the statement “no physical” scrawled on the front in red pen. When I asked them why the recruiters comment was they were afraid if I was in a position to not get my medication I would start losing maturity. I kid you not. Its Murphy’s Law he said. So now KS had blocked my path yet again but this time shed some light on how the entire syndrome is misunderstood.

Loose maturity? Really? I could not get more immature for my chronological age. No more depressed than ever I returned to work dodging my father as much as I could fully expecting the time for college speech.

Chapter 10, college:

I worked through the fall term avoiding school at all costs. By Christmas the ultimatum was in from the old man. Either go to college or move out and “start living your life”. Faced with such a charming choice I decided I would give college a chance. I signed up for the local university, got my on campus housing set up and was dutifully dropped off by my mother in front of the dorm complete with camp style foot locker. Carrying my heavy locker up to the second floor to my room was my first taste of dorm life. My second was the horrified look of the 6’5” soon to be roommate looking down at me. He closed the door behind him and hurried me down the hall to the Resident Assistant (RA) where he stated that he had no intention of rooming with me and there had better be another option. Welcome to college. A willing bunk mate was found and soon I was settling in for my new college life. I often wonder what the other guys in the dorm were thinking though. Dorm life is public everything. The showers were basically gym style so I had no possibility for privacy or the ability to mask my lack of development.

The first semester allowed my new dorm mates the ability to acquaint themselves with the fine art of practical jokes on the short fat smelly kid. Some of my favorites were wiring my desk with fireworks and setting them off when I was working and being called to the phone for a call only to listen to a dial tone and get an earful of Vaseline from the receiver. Add to this the general pushing and shoving and mocking it made for an eventful semester. To be fair to them, imagine being 18 and in college with your 14 year old brother? I had no idea how to react in many situations and I certainly was not helpful keeping girls around. My reaction was normal. Hide whenever possible. I even found myself crossing to the other side of the street when walking through campus just to stay away from some of the more focused dorm mates. Needless to say I was on campus just one semester and then spent my second commuting. I did rather poorly during both, not wanting to be there and being a bit depressed I finally dropped out and went back to work.

For all of my father’s best intentions by throwing me out of the nest to see if the wings would work he just did not understand the fundamental position anyone with later diagnosis KS is in. I consider myself one of the lucky ones being diagnosed at 17. I have read of many not getting treatment until late in their 20’s and beyond. But I was still emotionally and physically 14 to 15 at this time. Not close to being ready to be in a group of fun loving freshmen.

Chapter 11. Finding my way:

After about a year of work I was assistant manager at a hardware store. Good work for me. I am mechanically inclined so I understood the product and had even moved out and was sharing an apartment with a coworker. Although it was hand to mouth living with a car that had bald tires and barely ran, I gave little thought to my future and was just happy to be gaining some height and hair in the appropriate places. It’s been a year and time for my father to jump back in. As misguided as he may have been he was consistent and his heart was in the right place. He really wanted to help me succeed, he just did not know how. His solution as always was to throw me out into the world. Of course I currently was in the world but living on barely above minimum wage and this did not make for much of a future. Something he saw but I missed. Through a friend he found me a position on an island in the Pacific. I was to be a civilian stock clerk on a remote Army base with an 18 month contract. Room and board paid so I could save all of my money. His reasoning perhaps was to get me out there in a position that made it hard for me to back out. He was right. Being on the island was the best thing I ever did. Far away from the parents and on my own with no fear of how I was to make a living at least for the next 18 months was the best thing for me. Of course I still had the same bullies to contend with, the teasing, and practical jokes and in some cases outright cruelty were ever present but at this point I was reaching my present 5’ 11” frame and although still heavy and a bit awkward was now taller than most. That filtered out much of the teasing and I was gaining more confidence. Being on an island in the pacific is hard to describe. The sky at night, the water and the slower pace of life agreed with me and allowed the development process to catch up a little to my chronological age. I also began to work on my weight. After some fairly cruel ribbing by the typical work bully I challenged the office to a weight loss goal and won with over 15 pounds in a month. I did not stop there. With the island so small and no cars, I biked everywhere and started running. Soon I was a lighter and toned 150 pounds. This freedom from the other pressures allowed me to start thinking about my future.

I had several friends that were on the island with their wives and I really liked the idea of a family. Most of these guys were college graduates and I dedicated myself to completing college when my hitch was up. At the end, my boss desperately wanted me to stay there. I was even offered a promotion, but the ratio of guys to girls was about 300:1 on the island and the world on online college had yet to be presented. I returned home just in time for Christmas after passing through Hawaii for a couple of days making sure to bring back some fresh pineapples for the family feast. Now a couple of inches taller, much skinnier with a Pacific tan in the middle of the northeast at Christmas I stood out, but for the first time in a good way.

Chapter 12. I find an angel:

I was back home with money in the bank. Ready for college and to meet college girls. I was in great shape, running every day and exuded the confidence a standard 18 year old does ready to jump into the world. Yet I was 22 and entering college as a freshman. It did not matter. I was happy to be there. My father had purchased an Alfa Romeo Spider convertible after we returned from Iran. It was his medicine he said. By this time he was tired of it, and a bit too large. He agreed to sell it to me for a small down payment expecting the balance after I graduated and started work.
On top of the world was an understatement. Young fit and driving an Italian sports car I was driving along the road and saw a young lady I recognized. She was the younger sister of one of my brother’s friends. I had not seen her in years and I was not sure she would remember me but she was walking home from the bus stop and I pulled over to give her a ride home. She did in fact remember me and we talked for the short ride to her house. Just before she got out of the car she planted one square on my lips. I was stunned. This just does not happen to me.

I went on my merry way, not thinking too much about it. Well really thinking A LOT about it but she was 16 and I had just turned 22. I was in my room studying one night about a week later and my mom called up to tell me I had a phone call. Picking up the phone I was surprised to hear it was her asking me out. Do your parents know I ask? Yes they do she said, my mom said I should call. To be sure I contacted her father. He said he approved with an admonition to “bring her home a lady”. Yes sir.

To say the rest is history may be corny but as I write this we have been married more than 28 years. We have the same highs and lows as most married folks I imagine. As I reflect back on the four years between when we met and married, I can see the symmetry between my KS stunted development state and her age. Sure I was 22 at the time and she was 16. Emotionally I was more like 18 to 20. But more than that, she believed in me. She told me I could do anything and be anything I wanted to. Sure I felt that at times but the world is cold. What you believe and what others are willing to let you do are seldom on a parallel course. But when you have your best friend by your side to pick you up, dust you off and push you forward it’s a winning combination.

Chapter 13. We start a family:

We always knew conceiving naturally was a long shot. I was always open about the KS and the implications way back to when we were first dating. I knew how much she wanted a family and did not want to be the one not able to provide that dream. Again she picked me up, dusted me off and assured me we would get through it. We would adopt if need be.

After we were married about four years we decided it was time to start the process. We had just moved into our first house, had jobs and were living the new life together dream. After a reference from my doctor I was put in touch with a specialist at a hospital and made arrangements for my first appointment. When I arrived I had a brief meeting with the Doctor and he arranged for the blood work etc. Once all of the blood was drawn they asked me to disrobe and slip into one of those fun smocks. In walks a cute skinny blonde intern who proceeds to measure everything. And I do mean everything. Imagine my horror as I sat there completely in the buff a married 30 year old man having my manhood measured for a size comparison to standards. But you suck it up and deal. Its part of the KS survival pack. Adding to the fun, soon after I was asked to sit up and in walked the Doctor with about 10 other students and asked me about KS and if I knew anything about it.

Note to the Doctors. We REALLY don’t like being treated like lab rats. KS is an extremely emasculating and dehumanizing condition for a man. It impacts our bodies and souls. At the end of the hospital visit the Doctor advised that he had a solution. A pump system would deliver the medicine at regular intervals and over time I may develop the ability to produce sperm. The cost of the program would be extensive and the chances were not guaranteed. So we had a chance, but after the string of events during the day I left the hospital with no desire to be the test subject for the program. KS survival instinct. Time to hide. I told the Doctor I was going to think about it and went home. This was a hard time for us. I was not sure about the next step and I never told my wife about the hospital trip until years later. She thought I was having second thoughts about family and I think I was afraid of taking the final step to see if it was possible. If I never tried, it was always a possibility. If I tried and failed then there was a finality to it. My wife was patient. I think she knew I needed to wrap my head around the whole process. About six months later I reached out to the Doctors office to let them know I was ready to go. Sorry they said, the doctor that was running that program had moved on so they no longer could help. It was harder in the early years to find Doctors with the knowledge of what needed to be done.

As it turned out the new generation of working couples wanted families in their forties and more and more IVF treatment clinics were opening. This turned out to be very good for us. Now we had a place to go that was focused on starting families. At these facilities we were all having troubles. No one was an outcast. With the new team of Doctors I started on a regimen of Pergonal and HCG. Over the years I had been hot and cold on my treatment for maintenance. This were the years before androgelTM and its just no fun sticking a needle in your leg every two weeks. The needles for the new medicine were smaller and instead of just replacing testosterone, it made my body create it. With the new medicine my development took another leap. Now I became bigger and stronger and the hormone levels were off the charts. It helped that I had a bit of a physical job at the time but just the surge of development was a real ego boost.
Treating KS for fertility takes time and money lots of it. We tried for a couple of years but ultimately it was not to be. There were many reasons, but by at the end we just could not get to a point where conception was even close to possible. Its part of the reality of KS. One of the early symptoms of KS is undescended testicles. I had bilateral meaning both were undescended. If not corrected soon enough your natural body heat can cause irreversible damage to the teste’s. We tried other ways to start our family and ultimately turned to adoption. Adoption was another challenge but we were up to the task and ultimately became the proud parents of two boys. There are many children that need homes out there and we have two of the best.

Epilogue:

At 54 looking back I don’t feel cheated by KS. Sure there are things that I wish I was able to do. I will never smell my wife’s perfume, a rose or for that matter a fart. Being the father of boys my wife tells me I am lucky on the latter. I do wish that I was able to be with my wife as she carried a child. I know it was something she truly wanted to experience. Her giving that up for me the truest form of love I have ever experienced.

To the mothers of sons with KS that read this I would say be patient with the smells. We don’t know what they are or how in any way they could offend. Help us out along the way with clean clothes and make sure we wear them. Keep an eye out for the hurt looks after a bad day at school as only you can and please understand the outburst of frustration. We desperately want to be like all of the others but just can’t as early.
To the fathers I would say be supportive along our different path to manhood. The male world is a competitive take no prisoners environment. We desperately want to be like you but just can’t as early as the world expects. There is nothing more frustrating or hurtful than no action from our fathers because they do not know what to do. Anything is better than going this alone.

Most importantly, to the young men who read this I would say you are not alone. There are others who have run the same race and jumped the same hurtles. I don’t mean to minimize the challenge in any way. Treating KS is a long and frustrating process but it is treatable. You will grow up and you will be ok. My wife tells me one of the things most appealing about me was my sensitivity and let’s face it when you need to work harder at attracting the ladies you naturally want to learn what makes them happy.

If I never had KS I may never have met my wife or been father to my sons. KS is very frustrating in so many ways but there are many things in life that define us. I believe that KS is a part of my life and in part made me who I am today. Who I would be without it will be lost to the winds of fate. In the end I think my mother was right. I am lucky, I could have had diabetes.

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From → Personal reviews

2 Comments
  1. Antonio permalink

    Hi, my name is Antonio. I was diagnosed with KS at 17 also, but later found out it was IHH because I do not lack the sense of smell. This story is exactly what I experienced growing up.

  2. Presently, 43 here. Inside I feel like thirty something. Grew up, tried serving in the Navy. General discharge that for whatever odd reason reads, “not properly educated”. See a lot of me in this KS story. Recently, saw a doctor who told me despite a desire to come off testosterone, I’m not “allowed” or “able” to do that. Of course, this lady doctor had to further add insult by examining testicles. “Oh, soft and small.”

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